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Tuesday, 5 February 2013

Immunosuppressants

Sorry for the gap between posting, my mum came down for the weekend so it's been nice to spend time with her seeing as I rarely do get to see her because of my cat allergy.

I thought today I'd talk about immunosuppressants. This medication is only administered to eczema patients if the eczema is unresponsive to typical treatments such as steroid creams, antihistamines, oral steroids and protopic creams. The only thing about immunosuppressants, and the reason they're considered as a last resort, is because they dampen the activity of the immune system and are thus able to suppress the inflammation of the skin. Because they dampen the immune system this means that you are much more susceptible to side effects and infections... as I definitely found out.

I was first put on a course of Ciclosporin in 2010 after waiting for ages to get in to see the dermatologist here at Lincoln. These tablets can take up to 12 weeks to kick in, but for me it only took a matter of 2 or 3 days. My skin became completely and utterly transformed! I could go to the gym, I could do practically anything without my urticaria flaring. I even went home to see my Mum and managed to spend a night in my old bedroom. My skin didn't flare at all but my asthma was unbearable so I knew that would have to be the last of my overnight visits, sadly. But what you have to understand about my cat allergy is, even if I spend a little bit of time near them, or in a house they inhabit, within the next hour or so my skin would flare and my wheezing would become uncontrollable. Any longer, and it's a trip to A&E sadly :(

I remained taking these tablets for approximately 1 year, being monitored fortnightly for blood tests and my blood pressure. Some of the side effects Ciclosporin can cause include damage to the kidneys, cancers, high blood pressure and swollen gums. I did notice that my gums swelled a little and it was after a year of taking the medication that my blood pressure started to rise so I was taken off it.

Azathioprine was the next one they tried me on which did absolutely nothing for me after 12 weeks of being on it. My skin became bad because it wasn't being helped as much as it had with the Ciclosporin, so that was also stopped. They put me back on Ciclosporin at a slightly reduced dosage but it just didn't work for me as it had before. I was distraught. They kept me on it for over a year in the hope that it would start to kick in, but it didn't.

So that brings us to Summer 2012... where at the start of the year I was so ill I contracted the likes of eczema herpeticum and was put on steroids and antibiotics a fair few times as an attempt to control the eczema flares. We were also living in a house that was very damp and it didn't matter what we did, the mould would keep coming back, so enough was enough. I begged my dermatologist for another option. He wanted me to try Methotrexate but to me, the symptoms for that some how seemed so much more frightening than the Ciclosporin and Azathioprine, probably because it is only 50% effective in eczema patients... so we came to the decision to try me with Mycophenolate.

Mycophenolate didn't work either, but then I was only taking it for just over a week. In this week my health had become so bad that I had contracted eczema herpeticum AGAIN and had reoccurring tonsillitis. I also developed hand eczema at this point too. I really was in a low place.

We decided enough was enough with the damp and mouldy house we were living in, as obviously that wasn't contributing any good to my health, and the landlord was seemingly refusing to fix it. We moved into a newer, larger house in the middle of November which although I haven't noticed an incredible difference, is at least permitting me to go to work, which I couldn't in the months between September - November.

It was then in December that my dermatologist won me over to Methotrexate. Methotrexate is usually most used for conditions such as Rheumatoid Arthritis, and I actually know of a couple of people personally who do take it for that and don't have any problems. It was also initially used for cancer patients and it's function is to slow down, or halt the division of cells to reduce inflammation. By January I was beginning to lose quite a lot of hair and it was really upsetting me. I was losing daily what I would probably brush out in a week, so off it I came.

I'm still losing a significant amount of hair even now, and it's been around 3 weeks since I stopped the treatment. If anyone else has experienced hair loss from MTX how long did it take to slow down? I had to get quite a lot of hair cut off as a result because it had just become so fine and lank. I fought back tears when it was getting cut because as he handled it, I could see it was even worse than I thought.

So yes, that's my take on immunosuppressants. I would absolutely love if Ciclosporin worked again. Though perhaps it will do in a couple of years, who knows? Though I admit I don't miss taking the tablets. They're an inch long in size and stink of yeast!!

There was a picture floating about ages ago showing their size on a tape measure, but you can probably get the jist from these!

I'll talk about what treatment I'm currently undertaking in my next post :) Hope this has been helpful! xx

22 comments
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I'm so sorry that your eczema is so severe that immunosupressants were the only answer. Have you considered you may have a yeast overgrowth? When you mentioned the pills tasting of yeast it occurred to me that you have unknowingly offset the natural balance of yeast in your body. There are quite a few people that have seen an improvement in eczema and general health once they've cleansed their body of yeast. Here is an online test I found - may help you.

Hi, thank you for your comment :) the capsules don't taste of yeast, just smell like it. Not exactly the most appetising of smells when you first wake up on a morning! I've actually been prescribed thrush cream in the past to use on my eczema because I'm prone to sebhorreic as well as atopic, but it didn't work at all. I will have a look at your link though! x

Hi Jenny, thanks for your site, its great! My story is very similar to yours, I've tried all the immunosupressants, have asthma and allergies as well and nothing works. I started at first on Ciclosporin which seemed to work for the first 6 months but then stopped working so I started taking azathioprine at the same time which didn't work at all. i was on them together for about a year and a half and my skin was DREADFUL!I also lived in a very damp moldy house with a horrible landlord who wouldn't let us move out. So I got bone marrow supression from the ciclo and aza so had to stop but kind of wanted to anyway as my doctor just left me on them for ages and they weren't helping at all. So after a couple of months a tried methotrexate orally at first for 4 months then I had a break because I got HSV1 in a patch of eczema on my scalp (I left it for ages because I didn't know what it was and thought it was juts normal eczema- so lucky I didn't get eczema herpeticum!) then I tried injecting MTX for 6 months in case I wasn't absorbing it properly which wasn't fun but its only once a week so its not too bad. My hair fell out too but it wasn't too noticeable and I've got pretty thick hair anyway. As soon as I stopped taking it it all came back so I would not stop taking MTX only for this reason if I were you. Anyway that didn't work so now I've just started taking Mycophenolate so fingers crossed! A week really isn't long enough for it to work at all so maybe you should try taking it again? I can see why the doctors might not want you too though because of the recurrent eczema herpeticum.You should ask to be referred to St Johns Institute of Dermatology at Guys and St Thomas' in London, its amazing, the doctors are so good there and they take everything so seriously and are really thorough. I live in Brighton and used to see a dermatologist here but she was rubbish compared to them! Its definitely work traveling to see them as well. They've got this Dermatology Day Centre where you go everyday for a week and it really sorts your skin out- it's very boring though, just putting emollients and steroids on every hour all day! Anyway that's enough of my rambling! random question, do you use special suncream from the doctor? I'm looking for some for people on immunospuressants with sensitive skin. Thanks! Jade

Thanks for your comment, Jade! Do you frequent many other eczema forums? I seem to remember someone on one called Jade and when reading her stories found them to be fairly similar to mine, as yours are.

Sadly my hair is already really quite thin and fine, which I'm guessing is down to years and years of taking various medication as it used to be quite thick when I was younger so for me to even contemplate going back on MTX is something I really wouldn't want to do because of the vast rate that I was losing hair and how severe the loss looked in just a short period of time.

I'm now back on Mycophenolate which I've been taking since around the middle of February. It didn't seem to be doing much so my dosage has recently been increased. I haven't had any respite from my skin since August last year so I'm becoming pretty desperate. The eczema herpeticum is going to be something I will continually suffer from unfortunately but I'm now on a long term dose of Aciclovir to try to keep it at bay.

I will definitely research and ask about the Institute of Dermatology though I'm not sure how easy it would be for me to get to and from London on a frequent basis as it costs a fortune to get there from Lincoln. But thank you for giving me another avenue :)

I don't use special sun cream, no, though I should because I'm finding that unless my skin is in a decent enough state then the sun cream dries it out horrendously and I then have to apply moisturiser which of course acts as a cooking agent so defeats the object. Not good.

Definitely stay in touch though Jade as I'm interested in finding out more about how you get on :) xx

Hi Jenny, I have just read your immuno-suppressants post. Were you using steroid creams too while you were using them? Lots of people do. I have been on ciclo for about 15 months and I'm beginning to think its not working any more. i am due to try micophenalate (or some such). I have not used steroids since beginning the ciclo...thanks. Hope you;re doing well. xx

Hi Elaine! Yes I was using steroids for about 3 years whilst using the immunosuppressants, which is why I believe it could be adding to the overall problem for me. My poor body is just knackered. I did however use Ciclosporin again when I went into withdrawal and it did work but the infections were just too much. It was a case of do I want better skin or better overall health. My overall health won. Hope whatever you try next gives you some respite.xx

I've just come across this post on your blog as I was surfing the Internet to gain information on immunosuppressive treatments for eczema, & it was a very interesting read.

I've had bad excema since about 2004 on my hands, and in 2006 it spread to the rest of my body, at the age of 28 in a big flair up. UV light treatment worked wonders for me back in 2007, and it was under control through use of emollients and steroid creams for a good few years after that, but the condition got worse again in 2012. Patches on my body and flairs on my face and neck. I met my partner (recently ex) whilst my skin was in an "OK" phase. Then a few months later it started hitting my body harder again. Finally got re-referred to a dermatologist in 2013. UV light treatment didn't work for me 2nd time around just over a year ago. Skin wasn't great for the next few months, and my dermatologist was already suggesting immunosuppressive drugs for me to consider, but then had a massive breakout all over my body in May. It was horrendous, my skin was so sore all over I could hardly move, sleep or function for over 3 weeks. It calmed down after a few weeks, was on several courses of steroids but I don't think they did anything to help - the skin finally calmed down when it wanted to and not before.

But, even though it calmed compared to how it was during that explosive flair, my skin has been quite bad since then, and my dermatologist put me on ciclosporin back in late September.

Originally I was on 150mg twice a day for a couple of months, at this level it seemed to transform my skin for a little while. The dermatologist was keen to get me off this drug as soon as possible though, because it's seen as a short term solution. I agree with your comment regarding the smell of the tablets, they do stink! I was reduced to 100mg twice a day and currently 50mg twice a day and my dermatologist is keen to take me off it and put me onto either Azathioprine or Methotrexate. Ciclosporin seemed to work for the first few months, but the last couple of months my skin has got much worse again and at present it is bad; dry flakey skin over most of my body and red patches in many areas, dry itchy, sore, including areas of face and scalp. So at present, this low dose of ciclosporin is doing nothing.

I've also recently gone through a painful relationship breakup (it happened on NYE), which I partly blame on my excema as I struggled to cope with my condition and I was worried about the side effects of the drugs and my partner was frustrated that I wasn't willing to help myself; it caused strain between us. I feel so down about it and worry that I don't have the support of my partner any more and wouldn't want to inflict this condition on anyone else in the future.

We had gotten engaged last May, we have a house together, and 7 months after getting engaged she calls it off. Unfortunately through some of that time I just wasn't myself because my eczema was so bad, it was so uncomfortable to live with that I was down and miserable for some of that time and wasn't able to focus on our wedding plans. She was ultimately frustrated at how I handled my skin condition. I was too worried about the side effects, and it took me longer to start the ciclosporin than was ideal, but I did go on it eventually, just seemingly too late.

I am 37 years old and now I have to try and decide what the next course of treatment is going to be (as well as trying to deal with this breakup which is consuming much of my energy).

..... Sorry, my previous post was rather long! Once I got going I couldn't stop typing! What course of treatment did you decide to go on in the end (as I can see this post is a couple of years old), and are there any improvements in your condition?

I'm sorry for your breakup and what you're going through. I can relate because I was in a similar situation, although it wasn't as painful as your story. I found out that my eczema is caused by my food allergies, have you considered being tested? I just started this treatment called LDA immunotherapy, it's too soon to expect any results right now. Apparently, it's a very powerful treatment and only a handful of doctors in the US practice this treatment. I really hope this treatment works, i've tried countless immunosupressants and I'm just MISERABLE. I just want to end this all.

My 8 year old has an appt on this week to discuss starting Methotrexate. Ciclo. was mentioned at a different hospital over a year ago. Hard to make the choice for my son. Blood tests could be the deciding factor. No-go area. Last time, 3 hours, 3-4 nurses and myself to pin him down. I don't know if I could do that to him. Finished oral steroids on fri for asthma and antibiotic ends tomorrow -eczema looking great!

My 8 year old has an appt on this week to discuss starting Methotrexate. Ciclo. was mentioned at a different hospital over a year ago. Hard to make the choice for my son. Blood tests could be the deciding factor. No-go area. Last time, 3 hours, 3-4 nurses and myself to pin him down. I don't know if I could do that to him. Finished oral steroids on fri for asthma and antibiotic ends tomorrow -eczema looking great!

This is my second week on Methotrexate, and I feel as though someone has surgically removed my brain and left cotton wool in it's place, and taken any energy level I had with it!On the plus side my skin, which has been burning and itching for the last almost three years seems to be calming down, though I can get itchy /burny at night across my shoulders, my neck and and scalp..Has anyone got a positive message or experience of methotrexate they'd like to share?

Hi, I'm 58 and had eczema on and off all of my life.I've been on Cyclosporine for 6 months (two a day) but the dermatologists have now taken me off them, one week later the Eczema is flaring up again. I have an appointment with them next month when I'm sure they will want me to try Methotrexate, but all of the reports on side-effects terrify me.

Our three year old grandson has chronic eczema . We purchased the Foderma Serum to have our daughter try on him. She has now been applying foderma serum daily for about three weeks-just opened her second bottle, couple of nights ago she reported that the serum is working really well, and to date is the only such product her three year old has tolerated and has enabled such a positive result. Visible symptoms and itching are dramatically reduced.

Hi I'm a ex azathioprine user (ex as hair loss n inside mouth skin loss was unbearable ) and due back to see specialist this Friday does anyone know what they might try neXT with me....since stopping the burn and itch has been unbearable at timEssex and seem my excema is going through a really bad time my skin is thin due to over use of the steroid and this is why the tablets were used to give me a break from them xx thanks for reading folks

Hi, i have previously been on ciclosporin and it worked wonders for my eczema, i was only on it for a short period of time to prevent a flare up before i got married (around 4 months). My skin is so thin from prolonged topical steroid use and so i have asked my dermatologist about immunosupressant treatment again. She has not allowed me to go back on ciclosporin but suggested methotrexate but im concerned by all the side effects, particularly that your not allowed to drink at all and i do enjoy a glass of wine or two now and again. Has anyone experienced any adverse reactions whilst taking methotrexate if they have had a drink? I have been looking in to taking mycophenolate as it doesn't seem to be as toxic for the liver, what are peoples experiences of taking this for their eczema treatment? I have tried azothioprine in the past but i couldn't tolerate this as it made me very sick and i had incredible joint pain also. Any comments/suggestions would be really welcomed. Thanks Bec

I have severe "hand eczema" I have been in pain for two years straight, I received foderma serum yesterday and 1. It felt good going on, not the "I gotta get through the sting before I get healing" coping feeling but it felt GOOD GREAT even especially as recommended after storing in refrigerator. 2. haven't even had to use my steroids (using for 2 yrs up to 6 x day!!) once since I received this serum and my hands feel like they are healing HEALING !!

Hi, my eczema has also been considered severe since 2012 (had it since 2004) and have tried/still trying all the immunosuppressants you have listed.

I was on ciclosproin for around 1.5 years in 2012 and it worked very well only for 3 months. And as the trend goes, my skin progressively worsened beyond my original state.

2014 i was on azathioprine about 6 months and that didn't work at all.

2nd half of 2014 i was on methotrexate. This was the most effective treatment for me as it sustained me for 3 years. I just turned 19 so within those 3 years i was finally able to do sports in school, endure the blistering heat of my country (near the equator) and most of all sweat without itching profusely. The only side-effect i experienced was the occasional dizziness and rarer outbreaks eczema herpeticum (only 2 times if i remember correctly). It stopped working around June this year because i started to tail down the dosage - i was reaching the threshold before they need to test the toxicity levels in my liver and my doctor was trying to prolong my use of MTX as long as possible.

After another 2 outbreaks of the HSV virus, Ive now been on mycophenolate for a month with no observable improvement as of yet

I've also tried phototherapy for 3 months but stopped it because i couldn't build up the dose - missed several treatments because i couldn't leave the house. My brother has more severe eczema than i do but has found phototherapy more beneficial - itching less, nodules have reduced (But he still flares up slightly less often than i do). Methotraxate and ciclosporin didn't help too.

My mother and i have also tried Traditional Chinese Medicine where we drink boiled herbs for 2-3 years and avoid certain foods even if you aren't allergic to them. I tried for over a year and found that it didn't help me, but my mother was able to do it for 3 years and it actually worked for her. She only flares maybe 3-5 times a year (Not too horribly either) and is fully functional the rest of the time. Rarely does she apply steroid creams ~ only to help maintain it when she flares, even then she doesn't use the high strength steroids.

Just sharing since reading this page and other stories was helpful ~ coming fromva family of 5, all coping with eczema